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Stigma Conversations: Collecting and Analyzing Data

The general focus of this section is on collecting national and local quantitative data. It is also beneficial for Stigma Conversations planners to collect qualitative data through community needs assessments or through fostered conversations, individually or in focus groups, with those living with or affected by HIV.

All public health programs rely on data to identify the health and social needs of the community and inform effective programming, including stigma reduction efforts. Those implementing Stigma Conversations should begin collecting general population data, including HIV prevalence and transmission rates. Data collected should be disaggregated to help participants develop a holistic understanding of the HIV epidemic in their diverse communities. Such data will help to showcase which high priority populations exist within the community and should have access to increased interventions or further programming to provide welcoming environments. The following are suggested ways to disaggregate HIV information. The list below is not exhaustive and health departments should add additional information deemed relevant for the conversations:

  • Race
  • Ethnicity
  • Sex
  • Gender Identity
  • Sexual Orientation
  • Age
  • Socioeconomic Status
  • Immigration Status
  • Education Level
  • Geographic Area
  • Drug Use (type, route of administration, etc.)
  • Other Social Determinants:
    • For Example:
      • Healthcare Access
      • Employment Status
      • Housing Status

The following resources may be useful in helping to collect and showcase data needed for Stigma Conversations. 

National Data Sources

Tools for Interpreting Data

Review of Laws and Policies

Laws and policies have historically led to and perpetuated discrimination of persons living with HIV. It is important for planners of Stigma Conversations to understand current policies and laws that increase discrimination against persons living with or most affected by HIV, understand ways communities are mitigating the current policy, and identify opportunities to advocate for change.

More information can be found here.

Analyzing Data

Once health department planners have collected survey responses, cleaned the data, and are ready to analyze, they should use the following questions to prompt the analysis:

  • What are some of the common themes in the data? Are there any consistent gaps or specific concerns from community members?
  • What gaps can be resolved or supported through a Stigma Conversation and what gaps may require further interventions? How can we ensure the Stigma Conversation is a platform for developing these interventions?
  • Are there any gaps that were surprising to the health department planners? Those should be highlighted for additional conversations at the Stigma Conversations event.

Pre-Stigma Conversation Survey

Health Departments may be interested in hearing from stakeholders on their views of stigma and discrimination in the HIV response. The survey below can be administered to stakeholders with enough time for health department planners to incorporate feedback into the content of the Stigma Conversation (preferably one to three months before). Health Departments should adapt the survey to best fit the needs of their community, ensuring diverse prioritized populations (LGBTQ, women of color, etc.) are included in the assessment.

Prior to disseminating the survey, health department planners may be interested in conducting a stakeholder assessment to identify survey respondents. More information on stakeholder assessments can be found here.